His parents, Connie Yates and Chris Gard, argued radical treatment abroad could offer their son hope of recovery for his rare disorder. But doctors at Great Ormond Street Hospital said the unproven procedure would only prolong little Charlie’s suffering. In the end, following a series of court battles, Charlie’s parents decided to stop their legal fight to over-rule medics.

Many people have been left with questions of what is right, why the legal case has taken so long and why Charlie’s parents could not make the decision over their baby’s treatment.

Why Was This The Court’s Decision?

Many people have questioned why it is the decision over Charlie’s treatment could not simply be left to his parents.

In this case, Charlie is an individual with his own identity. When there is a disagreement between doctors and the parents, as there has been in this case, it is for an independent judge to consider the evidence objectively and make a decision that is in Charlie’s individual interests – not for the doctors or the parents to decide. It is for this same reason that the judge in this case could not be swayed by the volume of opinions shared on social media, nor even support from the President or the Pope.

In this case, Charlie is an individual with his own identity. When there is a disagreement between doctors and the parents, as there has been in this case, it is for an independent judge to consider the evidence objectively and make a decision that is in Charlie’s individual interests – not for the doctors or the parents to decide.

Charlie’s tragic case prompted a huge outpouring of public sympathy and support, but despite everyone’s good intentions nothing can influence or change the ruling of the High Court.

Background on Charlie Gard’s Case

Charlie’s rare condition, encephalomyopathic mitochondrial DNA depletion syndrome (MDDS), means that he has severe brain damage and is unable to breathe without assistance.

Charlie’s parents have been fighting for the right for Charlie to have an experimental treatment called nucleoside therapy. Doctors at Great Ormond Street Hospital (GOSH) had previously applied for ethical permission to attempt this treatment, which has yet to be tested on mice, but Charlie’s condition was deemed too severe for the treatment to help.

Charlie’s parents’ legal battle dates back to March, 2017. In April, Mr Justice Francis said that doctors could stop providing life-support treatment. In May, the Court of Appeal was asked to consider the case. This was dismissed, as was an appeal in the Supreme Court. Later in June, judges in the European Court of Human Rights refused to intervene following written submissions from lawyers representing Charlie’s parents.

Researchers from two international hospitals have since contacted GOSH with more information about nucleoside therapy, according to the BBC. GOSH have argued that the therapy available in the US would unlikely have a beneficial outcome and have sought permission to withdraw Charlie’s life-sustaining treatment and provide only palliative care. The hospital applied to the high court for a fresh hearing after doctors from the Vatican children’s hospital claimed unpublished data suggested nucleoside therapy offered some chance of improvement.

The doctors felt that continuing treatment – both conventional and experimental - was cruel. The legal question of what could be done was taken away from the doctors, who referred the case to court for an independent decision on what is in Charlie’s best interests.

The court made its decision by assessing all of the evidence, including the parents’ wishes and independent medical evidence, and they agreed with the doctors. Every other court has agreed.

This has been an absolutely heartbreaking case, but the highest court in the land has made a decision and that decision is binding, it cannot be overruled.

While this has been seen as a black and white case, as a parent it is anything but. It is unimaginable what Charlie’s parents will be feeling at this incredibly difficult time.

We can only sympathise with Charlie’s father’s questions of “what-ifs” and of how long the legal process has taken. When we look back at the timeline of the case, given the on-going disputes, the consideration of new evidence the courts have had to go through, and it all being done within the space of a few months, it is difficult to say that the process has taken too long.

Could Mediation Have Helped?

The question of whether mediation could have helped in Charlie’s case has been repeatedly raised. As Mr Justice Francis said, it may have helped to have a formal mediation, not just informal discussions, not only to address the main issues of whether Charlie should go abroad for treatment, but to narrow some of the issues. I think in the future if mediation would help. A case may still need to go to court but it may be that they go to court with some issues already dealt with.

Regarding the judge’s criticism of Charlie’s parents’ lack of access to legal aid, this is unfortunately something we regularly come across. One lesson we have learned from this case is that there is scope for legal aid to be made available on review.

In this area of law there is a means test assessment for families where in other areas of law. Charlie’s case has placed this issue on a huge platform for many to see the need for this to be reviewed. Despite this, Charlie and his parents were supported by the work of some of the best legal representation in the country, who must be commended for all they have done.

While this has been seen as a black and white case, as a parent it is anything but. It is unimaginable what Charlie’s parents will be feeling at this incredibly difficult time.

For a consultation with a human rights solicitor, call Slater and Gordon Lawyers 24/7 on freephone 0800 916 9046 or contact us online and we’ll be happy to help you.

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